Tuesday, May 30, 2006

30th May - back to work

Normality is creeping back into our lives as return to my desk and try and recall what I do for a living. I listen to Nik and Tom laughing, and occasionally crying, downstairs and yearn to join them.

We've had the acoustic hearing aids for nearly a week and Tom has had them in his ears for all of ten seconds. Any tips on getting toddlers to wear hearing aids greatly appreciated. I've wandered round in them, they have cute elephant stickers on them now and they've been left sitting on the couch to encourage 'familiarisation'. He doesn't yell when we put them in now - probably because he knows how quickly they can be taken out.

With Tom's temperature and virus a fading memory, the reasons to fret are thinning out. He still can't walk unaided although he only needs to hold one hand now and can see the usefulness of crawling which means he's more independent. Tomorrow is the MRI scan on Tom's cochlea to measure the extent of ossification - I'm actually more concerned about his reaction to not eating all morning than any fears about the scan itself or the anaesthetic. Too much time around such things makes you a little blase; its the realities of a fussy toddler that matter more.

22nd May 2006 - a month after diagnosis

We've been home a week and it is a month since Tom was admitted. It's an obvious time to pause and reflect but I'm way too tired.

Just as Tom seemed to be settling into some sort of 'normality' at home his temperature soars and we rush back to A&E at 4am on Sunday morning. Everyone is very understanding - there is no patronising of parental 'victims' of meningitis. The virus that it turns out to be is not serious and very common - this is what you get from hanging around hospitals too long.

So we're managing a 'normal' illness now - the kind that all toddlers get. Through all of it the determined little bugger continues to make progress and leaves us in awe. We turned round and found him climbing into his high chair this evening even though he can't manage more than a couple of faltering steps or the 'transitions' from lying to sitting and on to standing.

We have now embarked on the testing and analysis of the extent of Tom's hearing loss with appointments rapidly filling the weeks ahead. Post-meningitic cases are analysed pretty quickly because of the ossification of the cochlea that occurs in something like 80% of cases. We have the fitting of the acoustic hearing aids coming up followed closely by another MRI, an ERA (Evoked Response something or other) and other meetings to follow. Having watched a balloon burst inches from Tom's head without causing a reaction, we don't hold out much hope for the acoustic hearing aids and, assuming suitability, we anticipate that this is the start of the journey to a cochlear implant.

16th May 2006 - A day to remember

24 days after Tom was admitted with meningitis, he has been discharged. We are home to stay. Having spent most of the weekend at home on a hospital-approved 'sleepover', Dr W. confirmed that there was little reason for us to carry on cluttering up E37. The nurses only ever popped in to see if they could raise a smile rather than a scream from the boy (the odd rare success) and to take his temperature. Its fluctuations and tendency to rise is what has kept us in for the last week - various nasty reasons have been ruled out (collections of pneumococcus lingering, permanent damage to the regulatory part of the brain, that sort of charming possibility) and, although we remain a little anxious, its time for us to relearn that parenting thing.

A day after being home and Tom seems exhausted. He's been trying to do everything at once and, with frustration increasingly noticable along with erratic sleep, he's worn out. Nik and i share the feeling. While four hours a night sustained us in hospital, the adrenaline is ebbing away and we feel drained. Tom has the mobility of a ten month old with the desire to explore of a toddler and we now have to temper our desire to indulge his every poorly whim. Separating toddler tantrums from the needs of a recovering child is not straightforward.

13th May 2006 - another week passes

Another week passes as in-patients at QMC. Time seems to have arrested in here with visitors occasionally bringing news of the world outside. We have all become institutionalised and, aware of this, the hospital has started the gentle process of expelling us. We have been out on day release and have spent a gloriously sunny afternoon watching Tom drive his car round our garden.

Nervous and scared of tempting fate, we have to acknowledge that Tom has made enormous progress. In five days of physio Tom has progressed from barely being able to support his head to sitting upright on his own (albeit slightly wobbly at times) and successful use of 'paddle' style ride on toys. To say its incredible and moving are criminal understatements; it has been like watching his first year of motor development revisited on fast forward and condensed into a week.

Alongside this increased activity, Tom has let free his cheekiness too; smiling, eyebrow raising, commanding grandparents to tickle each other and perform his every whim. There is no doubt that our little boy is back and the joy we feel is palpable.

This is, of course, tempered by the confirmation on Wednesday that Tom has significant, if not profound, hearing loss. The process of its assessment an management has begun. Ear moulds have been taken (despite some furious objections from the subject), referrals to various professionals made and literature shared. Cochlear implants are a possible route which, if suitable, could have a huge impact. We continue, as ever, to hope. It's getting a little easier to do that now.

5th May 2006 - two weeks in hospital and counting

Tom continues to improve daily. He has started eating and it feels like a huge step along the road towards being a 'well kid' again rather than living on drips and supplements.

He likes to spend all his time on our laps - the nearest equivalent to his 'old level' of activity that he can currently manage. He is still very weak and painfully thin although his neck has strengthened as the week has passed and the site of lunch brings about some serious attempts at sitting up.

After a nervous start on Tom's part, Friday brings real progress with the physiotherapy. We have got to the stage of recovery where Tom can now go off the ward for a little while. This means that we can go down to the physio 'gym' which, to Tom, looks like a playgroup church hall all to himself. The two therapists assess Tom while he gingerly stretches for toys and pushes balls through holes while being supported by me. All this is fed back to Dr W. (consultant neurologist) who is as pleased as we've seen him (and a little surprised if our much discussed assessment is anything to go by).

Outside, spring has arrived with high temperatures. We take the opportunity to take Tom out in a buggy - an event of some significance to us that we've been longing for. After initial, loudly expressed disapproval, Tom sees the point of the buggy as his route to more freedom and embraces it. Suddenly mundane strolls to the hospital newsagents and out into none-too-pretty Lenton take on enormous meaning. Tom smiles and gets excited as we pass through the car park. We could just do laps as far as he's concerned - cars and bikes have lost none of their appeal.

Friday also brings a visit fom Dr. W who has acquired the wonderful habit of cheering us up. The antibiotics are due to end on the 6th which means, hopefully, departure is in sight. A gradual reintegration into our home life is planned with 'day release' and 'sleepovers' to be set up with the transition to ou-patient status carefully crafted. Tom still doesn't seem to be able to hear so tests are arranged with the appropraite services. Somehow, in the scheme of things, this is of little concern to us although I suspect this will change pretty soon...

2nd May 2006

A roller-coaster day that has become the norm.

Last night was not an easy one for Tom or, consequently, us. He can't settle for any length of time and frequent observations/drug administrations are greeted each time with apoplectic indignation sending the pulse meter off the scale. We manage a few hours sleep interspersed with relay brow-stroking.

Then, shortly after we reach a vaguely concious state and the morning has properly broken, Tom starts chatting. Was that 'Mummy..' we heard?

He sees the phone and names it, 'Cbeebies', 'Builder..' is requested and off he goes. A busy half hour of his gorgeous little voice and then...a day of him being mostly fed up.

Tom seems very sleepy but just can't nod off and we're suddenly back where it all began and I'm seeing fits. The doctors try to reassure - if they are fits, they're small and won't harm him. This is little consolation.

Later in the afternoon, after some snoozing and a visit from the consultant, Tom perks up. We have the most special hour with Tom on my lap. Peepo games are played, tickling is done and Tom moves through his repertoire of favourite words and phrases, 'My daddy' being a personal favourite.

He still has trouble controlling his head and we're pretty certain he can't hear but our boy is back.

1st May 2006

Over the weekend we deal with diarrhoea, a right arm that can barely move, glassy eyes and another MRI. I fall asleep next to the scanner, heavy duty earphones barely keeping out the machinery's drone.

We are moved to a side room in the ward - our visitor numbers never quite reach double figures but it has been close once or twice. Tom's last canular fails and his puffy little limbs can offer up no more veins for punishment. I accompany him down to theatre where he has a femoral line put in (and also, while under anaesthetic, the kind staff give him a wash and blow dry, removing three EEG's worth of gel and glue).

Progress is inexorably slow and painful but there are postive noises from all concerned. Tom starts to play; cars are gently guided along the mattress next to his face with his good arm and buttons are pushed on activity centres. Peepo games bring the smallest smiles.

By the end of Mayday weekend we have a little boy with:
  1. two windmilling arms designed to prevent administration of medicine
  2. a pathological distrust of anyone in blue and white nurse's stripes and people bearing small torches, syringes, small mallets, probes, blood pressure cuffs and thermometers
  3. a hatred of nappy changes and the sorest of bottoms (not a good combination)
  4. a shy but welcome smile
  5. a very sore neck
  6. a long period of dependence on antibiotics, physiotherapy, hearing tests and goodness knows how many dates with those listed in (2)
  7. a devoted set of parents, grandparents, aunts, uncles and a list of wellwishers that goes on forever
  8. a lifesize Postman Pat and numerous other new 'cuddlies' when all he wants is cars.

27th April 2006

Tom is prepared for transfer to a ward. Although his electrolytes aren't quite all together, intensive care is no longer needed. We don't know how we feel about this. No-one at the end of his bed day and night? But it means we're nervously going in the right direction.

The ward is an odd place after PICU; noisy with voices rather than machinery humming and pinging gadgets. I'm not sure I like it - there's a feeling of claustrophobia and helplessness. Tom responds in the same way and takes something of a downturn. Anxiety, never far away, bubbles quickly to the surface.

26th April 2006

Tom is extubated and we hear our son's voice for the first time in nearly a week. Throat sore from the tubes, Tom's cries are pathetic and his few words hoarse.

Our boy is out of his coma. I can say the word now it's over.

Stiff and disoriented Tom lies in his mum's lap. At one point he squawks 'cuddle' and we cry.

The physiotherapist listens to his chest, checking if any fluid remains. Tom takes out his dummy, shouts 'Don't!' and puts it back in again. I cry again.

Later in the afternoon Tom becomes separated from his dummy and demands its return. Our little boy is back and I can face calling a few more people.

25th April 2006

Mornings are the worst. Waking up hoping for news, then getting to the ward and finding our little boy looking as sick as when we left him.

Further conversations with consultants don't help. They are all saying the same thing if you deconstruct it but it doesn't always appear that way on the recipient's end. An MRI has been done and confirms the CT - the brain parts that have been 'insulted' are listed. The list is too long. The bacteria have been making whoopee in my boys middle brain.

But the proof remains in what Tom does and he starts a pattern that we see every day. The mornings are times of anxiety when despair gets a foothold. Various tests then start and visitors arrive bringing with them fresh doses of optimism. As the day wears on the optimism seeps into our bones and, by evening, we can see the progress and the proverbial light at the end of the tunnel.

The senior paediatric neurologist sees us at 9pm by which time Tom's eyes have crept open by a millimetre or two and he pulls grimaces when moved. The neurologist makes positive noises and we go to bed with the now ritualistic bottle of wine as our own anaesthetic and hope for great things.

24th April 2006

We awake in our new lodgings in QMC's family unit. We haven't been called in the night and that doesn't feel good. The twenty-four hours have come and gone and Tom has shown no signs of waking. A feeling of impending doom engulfs us both.

Doctors do their rounds and tones seem more hushed than usual. We are taken to a small side room by the consultant and Tom's nurse. A second CT has revealed 'infarctions' - insults to our baby's brain. He is damaged. We are told that it is uncertain what the end result will be - the doctors do not know. CTs are pictures; snapshots in time. The best proof is what Tom does and all we can do is watch and wait.

We are left on our own and break down. I hear noises that sound like animal death cries and realise its me making them.

More EEGs, more waiting, more trying to make Tom wake up through will power alone as the comment 'the longer he stays unconcious, the more worrying it is' hangs around in my head. Tom's GCS scores don't do much rising. Grandparents try and talk Tom into opening his eyes. He ignores them. Nik has a cuddle. Tom doesn't move in her arms. We are so very scared that this is as far as he can progress.

Little can reassure us. The collective strength of our families is brought to bear. The hospital chapel is visited by two godless heathens who promise all manner of things and search for hope in the faith of others.

The day wears on and somewhere, deep down, we find hope. It's simple: he has to get better.

We barely sleep.

23rd April 2006

Watching and waiting.

Tom doesn't stir but is moved onto his side at regular intervals. Family float in and out and the routine of PICU now features us. I look more closely at the obs chart and see the word 'coma' as part of the 'Glasgow coma scale'. I see Tom's score but it means nothing. I overhear consultants on teaching rounds discussing scores and trying to interpret. Nik and I alternate between weeping and soothing each other. We wait. So does Tom.

22nd April 2006

We come in to A&E in an ambulance. Tom has been having 'vacant episodes' on the back of two days of drowsiness and is clearly in pain. He drifts in and out of what we thought of as sleep only to shriek awake. A&E take things very seriously and the series of events leaves us little time to think. Shock carries us along as the words 'fit' and 'meningitis' are uttered around us with increasing frequency.

Antibiotics and antiviral drugs are hastily pumped into Tom. An anaesthetist comes down and explains the process of intubation that's going to be carried out to enable a CT scan and lumbar puncture... all these grown up, late night TV procedures being performed on his fragile little body. Terror is the only word I can think of to describe my feelings. Tears come readily as I begin the process of ruining the quiet Saturday afternoons of our families and close friends.

In southwest Scotland my mother-in-law jumps into her car and begins the five hour journey south. My parents race over from their home nearby and, with many more tears and as recipients of many soothing words, we find ourselves next to our angelic sleeping boy with a tube up his nostril, the large tube in his mouth providing support for his breathing, canulars in three out of four limbs, a glowing digit monitoring 'pulse ox' and a trio of ECG contacts on his fragile barrel of a chest.

High on morphine and sedative, he could be sleeping for anything up to 24 hours we are told. Sleeping in his archway of lights and electronics, a nurse at the end of his bed continuously watching, monitoring and recording. Doctors visit frequently. We try to take things in. Good, pleasant words float around. CT scan normal... he'll wake up soon. We hear the word 'Pneumococcus' for the first time - it isn't the worst but it isn't good...

We are found a couple of beds in an unused bay on the children's oncology ward and try to get some sleep. I find time to feel sympathy for the poor kids nearby. My eyes leak but Nik and I find resolve for each other.